Thursday, November 10, 2016

Now begins Round 2 of my cancer fight. I have joined a clinical trial of a drug that has shown promise in at least temporarily keeping the bad stuff at bay. This will require traveling -- weekly at first, then every two weeks -- the 135 miles from my home in Washington, D.C., to the University of Pennsylvania campus in Philadelphia.

The standard first-line treatment for my cancer -- cholangiocarcinoma, or cancer of the bile ducts -- is chemotherapy consisting of gemcitabine and cisplatin. There is no standard second-line treatment.

Different doctors said different things about my response to “gem/cis,” but Jacqueline -- my wife, chief advocate and one-woman research staff -- and I refer to it as mixed. The main liver tumor stayed more or less stable, but the cancer metastasized to my left thighbone and my spine. Because of those metastases, my main oncologist recommended against the targeted radiation treatment we had hoped to try next and encouraged us to get into a clinical trial of an experimental drug.

I was all set to join a trial being run by the National Cancer Institute at locations including two close to home: Sibley Memorial Hospital, the Johns Hopkins affiliate where I’m receiving most of my care, and nearby Georgetown University Hospital. That trial would have been a fine choice, but toward the last minute Jacqueline and I decided to pursue the Penn option, which is more specifically geared toward my rather rare situation.

There are about 2,500 new cases of bile-duct cancer every year in the United States. That’s one person in 100,000. Ain’t I special? But I get special-er. I have the intrahepatic form of the disease, with tumors contained within the liver, which accounts for about one in 10 cholangio cases.

And there’s more! Part of the modern treatment strategy, insofar as one exists, is to have a tumor sample tested for genetic mutations. I was lucky(!) to come back positive for the FGFR2 mutation, which in its fusion form (there is also the amplification form) is found in a minority (somewhere between 9 percent and 30 percent) of intrahepatic cases. Jacqueline found that the drug company behind the Penn trial had seen enough encouraging signs in patients with my subtype of my mutation in my subtype of my cancer to break out an arm of a larger study to look at just my situation.

While all that may sound swell, the fact is that this is an incurable disease. All the chemotherapy and radiation and experimental drugs and targeted genetic therapies and immunotherapy and even surgery (not even an option for me, now or probably ever) serve only to buy months or maybe, just maybe, years. Now, there are some signs that my mutation points to a more “indolent” form of the cancer, a bit of potential good news that I’m happy to hold tight, and maybe that means I get more time than most to kick the can down the road, as Jacqueline and I say. Better than kicking the bucket.

I’ve been fortunate so far, aside from the damn bone metastases. As I’ve reported in past updates, the chemotherapy, which is so devastating to so many patients, was a joy for me. The results were mixed, but the experience was nothing but pleasant. (The doctors and nurses assure me that they had never heard that before.) Then again, there are stupid setbacks. The pain medications I was initially on made me puke my guts out. Changing those made a world of difference. (For plenty of other people, my new medications are unbearable and my old ones work like a charm.) More recently, just last week, an infusion of a bone-strengthening drug resulted in perhaps the worst day I’ve had since I first got sick. Flu-like body and bone aches, headache, chills and hot flashes, vomiting (breaking a long streak!). I was fine the following day, only to find myself hunched over the toilet again this week. My best guess is that a new calcium-and-vitamin-D supplement was to blame. (Did I say stupid?)

But I’m still standing. I’ll take three pills a day for the trial, and have plenty of blood and urine tests and EKGs, but the first scans of my innards won’t be until the eight-week mark, and my doctor at Penn cautioned against expecting to see much of a change, though she was optimistic about the possibility of a “boring” but encouraging result: a tumor that stayed the same size.

“We don’t have magic pills,” she said.

“But I specifically requested the magic ones!” I replied.

Here’s hoping for at least a tiny bit of magic. And maybe some Philly cheesesteaks and hoagies and roast-pork sandwiches.